Reviewing the death of a baby is part of standard NHS care. It is a vital part of helping parents understand as much as possible about what happened and why their baby died. Reviewing all deaths is also a way of understanding whether there are any improvements to care that could be made for future families. Understanding these could save lives.
Sands has long campaigned for every baby’s death to be reviewed in a thorough way and to include parents' own perspective of their care, their questions and concerns. Sands is at the heart of work to ensure that this happens in a sensitive and meaningful way. We are involved in a number of initiatives across the UK to improve the ways lessons are learnt after the death of a baby, through our membership of the MBRRACE-UK/PMRT collaborations and the National Child Mortality Database Steering Group.
Perinatal Mortality Review Tool (PMRT)
The PMRT is available for free across England, Scotland, Wales and will soon also be available in Northern Ireland. The PMRT is an web-based tool which supports robust hospital-based reviews for every late fetal loss, stillbirth or neonatal death (of babies more than 500 grams), up to 4 weeks of life and including babies who died later but spent time in a neonatal care unit.
Sands is directly involved in the development of the PMRT which is run by a collaboration led by MBRRACE-UK (Mothers and Babies: Reducing Risk through Audit and Confidential Enquiries across the UK).
The PMRT's first annual report summarising the quality and findings of the first 1,500 reviews which used the web-based tool, is available here: https://www.npeu.ox.ac.uk/pmrt/reports
Resources to support Parent Engagement in the PMRT
Sands' aims to ensure that the voice of parents is at the heart of any mortality review process, and that they are given the opportunity to ask questions and give their perspective of their care after their baby died. These should be addressed by the review team.
The PMRT group, with Sands input , has developed a series of resources to support health professionals in implementing parent engagement in the mortality review process. These include:
- a flowchart, week by week pathway, for parent engagement
- information for parents about what the PMRT review means
- template follow-up letters for communicating with parents
- a guide for health professionals in writing sensitively-worded and plain English summaries of the review's findings to share with families
These are all available on the PMRT website https://www.npeu.ox.ac.uk/pmrt/parent-engagement-materials
To read why it's important to offer parents the opportunity to share their views and questions as part of the review process download "Role of parents in reviews" presentation; or hear Charlotte Bevan, who's part of the PMRT collaboration, discuss why some parents may want to engage in review, in the podcast below.
Healthcare Safety Investigation Branch
The Healthcare Safety Investigation Branch (HSIB) runs a maternity investigation programme in England only. HSIB is funded by the Department of Health but works independently.
HSIB carries out an investigation if a baby died during or after delivery after 37 weeks of pregnancy because something went wrong in labour. The critical difference between this and a hospital review is that HSIB investigations are wholly independent and not run by staff from the Trust where the baby was born or died. They are only carried out with parents' consent.
Parents should be notified before they leave hospital if an HSIB investigation is likely to take place. An investigator will contact parents within 5 days of going home from hospital. A hospital review of a family's care will still be carried out even if an HSIB investigation is also being undertaken, but the hospital-based review will not conclude its findings until HSIB has finalised its report.
Information about HSIB investigations can be found here: https://www.hsib.org.uk/maternity/
Saying Sorry when a baby has died
Principles for engaging parents in review/investigation
Sands has developed a set of principles for engaging parents in any review or investigation of their baby's death.
Each Baby Counts
Each Baby Counts is run by the Royal College of Obstetricians and Gynaecologists. It has been collecting information about every baby in the UK who dies or is seriously brain injured during birth. This information comes from the hospital’s review of what happened.
By collecting and assessing the information from all hospitals, the Each Baby Counts team can see if these incidents have things in common. Using the learning, the group makes recommendations for how to improve safety on labour wards.
Each Baby Counts aims to reduce such tragedies by half by 2020.
Sands is a member of the Independent Advisory Group for Each Baby Counts, ensuring parents’ views are heard.
National Child Mortality Database (NCMD)
Sands is on the Steering Group for the National Child Mortality Database, a data information hub for the deaths of all children under the age of 18, in England.
U(It doesn't include information on stillbirths. Information on stillbirths is collected by MBRRACE-UK.)
he NCMD was launched in April 2019 and aims to improve our understanding of why children die and prevent future deaths wherever possible.
The NCMD's first annual report on progress to set up the database, was published in October 2019
Their first impact report was published in July 2020